Idiopathic pulmonary fibrosis is a rare chronic, progressive lung disease. Dr Karen Moor and Dr. Marlies Wijsenbeek of the Erasmus Medical Center discuss the use of eHealth technologies for research purposes in this patient population
Idiopathic pulmonary fibrosis (IPF) is a chronic, deadly disease with progressive scarring of the lung tissue (fibrosis), resulting in a poor prognosis and a devastating impact on the lives of patients and their families. Progressive shortness of breath, cough and fatigue are major factors influencing health related quality of life (HRQOL) in patients with IPF. Two drugs are available that slow down disease decline, but unfortunately these anti-fibrotic drugs do not cure the disease. Regular hospital visits are challenging for most of these elderly patients due to their symptom burden and often extra oxygen use. Innovative new eHealth technologies have a great potential in this patient group, as data collection and care at a distance can easily be facilitated.
At the respiratory department of the Erasmus Medical Center Rotterdam, we have developed a home monitoring program for patients with IPF, called IPF online (www.ipfonline.eu). IPF online has been developed together with a panel of IPF patients. The home monitoring program consists of home spirometry, online patient-reported outcomes, reporting of symptoms and side-effects, an information library, eConsultations, video consultations and a graphical overview of results. Data are directly shared with the healthcare providers and the system generates automatic email alerts if lung function declines or side-effects are bothersome. IPF online is a secured personal platform, in line with European safety and privacy regulations.
IPF online is used in the Erasmus MC and in an increasing number of other hospitals for research purposes as well as clinical care. Currently, the home monitoring program is being expanded for other (rare) lung diseases, such as other forms of lung fibrosis and sarcoidosis.